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Old 04-20-2012, 10:16 PM   #1
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Do You Tell Them They Have Alzheimer's

My dad has Alzheimer’s. I am certain that my mom has never told him. He is confused as to why he is confused and forgets things.

Do you tell them what their condition is? Is it morally or ethically right to not tell someone that is, or maybe make that was, knowledgeable about this disease that they have it?

Somehow I think they have this right. Is it better to not tell them?

Last edited by DannyTX; 04-20-2012 at 10:17 PM.

 
Old 04-21-2012, 06:26 AM   #2
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Re: Do You Tell Them They Have Alzheimer's

Hello and welcome, everybody is different and react differently, my mom at one time know something was not right but to save her stress we side stepped the issue. My sister on the other hands knows that she has frontal lobe dementia and is handling it as well as expected. I think the most important think is to know how the person will handle the news of the devastating disease. With mom we wanted her to be happy and like I said stress free so nobody said anything, if she asked we may has said things like, oh ya know everybody forgets now and then,, or something along thoses lines. My sister as I said if the other side of the coin and has knowen what is happening. You will no doubt find that as the diseases progresses that weather they know or not really takes second fiddle to everything else in the crazy world of Alzheimer.

Big hugs to you judy
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Old 04-21-2012, 08:36 AM   #3
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Re: Do You Tell Them They Have Alzheimer's

Quote:
Originally Posted by DannyTX View Post
My dad has Alzheimer’s. I am certain that my mom has never told him. He is confused as to why he is confused and forgets things.

Do you tell them what their condition is? Is it morally or ethically right to not tell someone that is, or maybe make that was, knowledgeable about this disease that they have it?

Somehow I think they have this right. Is it better to not tell them?
It is not the issue of being moral. Yes the person has a right to know that. However, at times, the person denies it or gets ****** off at it. Rarely the person accepts it. Even if he accepts it, he will forget later as he gets sicker.
Yes, in early stage, you may try to tell him nicely and see how he reacts.
My FIL knew it when he was diagnosed. He denied it and said he would know since he was a physician in his home country. He still denies it. However, I think at some point in moderate stage, he thought about it and asked my husband to take care of him. Just once for 5 minutes: He saw a TV AD about the dementia drugs and he felt a little sad. Earlier, he saw the Ad and laughed about it thinking he does not have Alzheimer's.
He does know something is wrong with his brain and he knows he has memory issues.

You can try it but please understand the issue is not about moral, it is about his own acceptance.

Regards,
Nina

Last edited by ninamarc; 04-21-2012 at 08:40 AM.

 
Old 04-21-2012, 09:48 AM   #4
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Re: Do You Tell Them They Have Alzheimer's

I agree that it is not a moral issue as much as an issue of what is right for you Dad. Each person with Alzheimer's is different and you have to understand your Dad and what stage he is in to know what to do. You also need to respect your Mom's wishes since she is the person responsible for Dad's care.

In the early stages, there are some that can deal with this diagnosis well. I had an aunt who learned her diagnosis in the early stages when she could grasp the concept and internalize it enough to remember. She got herself a journal, wrote notes to herself and for her husband so she didn't forget what she wanted to communicate, and used post it notes to remind her where things were and what needed to be done. She understood her diagnosis and worked with it. On the other side my Mom knew because of her familiarity with the disease what was happening to her. She hide it, she railed against it, she became depressed and miserable. I believe her fear and fight against this disease is what caused the hysteria that continued for years until she ended up in a Geriatric Behavioral Med Unit.

When a patient reaches the mid stages of the disease they are not able to comprehend or remember the reason for their confusion. This is when most are actually diagnosed. They may have moments when they know something is not right but their ability to understand and retain the information needed is severely limited. If we sit and explain what is wrong they react with limited understand usually become distressed and fearful. Then they forget. We do it again... they forget. So you are causing distress and fear repeatedly with no gain. That is so unfair to them.

The issue you are probably struggling with is the difference between what needs to be done for your Dad with Alzheimer's vs what you would have done for your Dad without Alzheimer's. It is difficult to accept that Dad can't understand. It is difficult to accept that Dad needs you to do something different from what he has taught you to do all of your life. I went thought that mental debate with myself. I remember well the very moment I came to the realization that I could not continue in my normal Dad Daughter relationship doing what we had always done in the way we had always done it. I remember the first time I had to stand up to my Dad and basically defy him. I gave him what he needed. It was life changing but it was for Dad. My dad had Vascular Dementia for 12 years and he never knew. Since my Mom pasted the point of understanding and remembering nobody has mentioned the word Alzheimer's to her. In fact she read her diagnosis report repeatedly over a span of two days and was shocked each time she read it so I removed it from the house.

Talk to your Mom and find out why she has decided not to explain the diagnosis to your Dad. Evaluate your Dad's level in the disease. If he can not understand and retain the information please spare him the distress of repeatedly telling him. If you feel you have to tell him then pick a moment when he ask and tell him ONCE! If he doesn't retain the information don't do it again

Remember that this is about Dad and helping him.... sometimes that clashes with what we know or want to do but right now it's about helping Dad.

Love, deb

 
Old 04-22-2012, 04:01 AM   #5
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Smile Re: Do You Tell Them They Have Alzheimer's

Danny, Alzheimers is a scary word, I say why tell him and worry him more than necessary. In time he won't remember it anyway. My mother has vascular dementia, she knew something was wrong and asked to see the doctor in the early stages, had the memory test and was put on medication. I just told her it was a memory lapse that a lot of seniors experience. She went through many stages from terror to combativeness to thinking I was stealing from her. All these stages change as time goes by. The main thing is to get paper work in order that somebody can take care of him in the future. It is a rough road with not a lot of hope. But as Deb says "It is what it is" and just take it one day at a time and you will get through it.
Aras

 
Old 04-22-2012, 11:34 AM   #6
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Re: Do You Tell Them They Have Alzheimer's

It is more important that you have the documents for POA (power of attorney), health directive, living will and etc. in case Dad gets worse. It helps if you are the POA as a backup. I hope your Mom is the POA for her husband. Both medical and financial paperworks are important.

Regards,
Nina

 
Old 04-23-2012, 03:13 AM   #7
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Re: Do You Tell Them They Have Alzheimer's

Ninamarc makes a very important point. While it depends on the individual, the stage at diagnosis is important.

My husband was told by the doctors about the diagnosis, which was vital information for him and for our family. My husband had to stop working, lost his driver's license, and we needed to put legal documents in place while he was still well-enough to meet competency tests for his Will, living will, durable power of attorney and other directives. He needed to tell all of his doctors that they could speak with me.

Yes, he was obviously upset about the diagnosis but there was also a big element of relief in knowing what was wrong. As a family, we were able to make lifestyle changes that could help him. We put up a big calendar white board in the kitchen, for example. We were fortunate in that my husband understood his diagnosis for many, many years. He would accept that he was no longer able to use a stove or mechanical equipment without fighting with us.

On the other hand, if the patient is already unable to grasp the diagnosis or if there is some other reason why the patient should not be told, there can obviously be good reasons not to tell them. Would they understand or remember the diagnosis? Would they be equally satisfied just to be told that it was something minor, if they are asking about a diagnosis? You may find that the doctor already told the patient. It's unusual these days for a doctor to withhold a diagnosis, or to leave it to the family to decide whether the patient should be told. Telling an AD patient who can't grasp the diagnosis that they have AD over & over again can just upset them each time they hear it, if they have no memory of hearing the diagnosis the first time. If the disease has progressed, their reactions may be disbelief or combativeness because they may not even remember going to the doctor. They may think you're the one with problems, and that they're just fine. There's no easy answer for this question.

 
Old 04-24-2012, 09:46 AM   #8
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Re: Do You Tell Them They Have Alzheimer's

I think a key to the answer is whether the person still seems to be able to comprehend the information, keeping in mind that many affected persons may seem to understand more than they are currently understanding.

Unfortunately, by the time someone has noticed the symptoms and gotten a diagnosis, the person is usually somewhat past that point and is often at the point where they will deny it and disagree with it and try to disprove it.

I think further that you have to try your best to figure out whether the information, even if it could be processed, would add to or detract from their quality of life. Are they going to be reassured by it, or just more scared and terrified.

Additionally, there is a good chance that you could go through a painful process of telling them.. .and then they forget. And then you could go through the process a thousand more times, because they keep forgetting.

If the person has not sought out the diagnosis themselves, and it is not early, then I would suggest there is a good chance they are beyond the point of really processing it, or at the point where denial would be their primary approach.

There is a halfway measure that worked with my aunt - who by the way was told by several doctors outright that she had some mini-strokes and the associated vascular dementia, but she forgot many times.

When she asks or expresses concern about confusion / memory issues, we remind her she had a mini-stroke and the doctors are giving her the proper medication to help her as best they can.

But we don't say "dementia" to her. Some people are terrified of certain words like "cancer" or "alzheimer's" so sometimes you just have to dance around things a little by letting them know that they are getting the right treatment for their symptoms.

Quote:
Originally Posted by DannyTX View Post
My dad has Alzheimer’s. I am certain that my mom has never told him. He is confused as to why he is confused and forgets things.

Do you tell them what their condition is? Is it morally or ethically right to not tell someone that is, or maybe make that was, knowledgeable about this disease that they have it?

Somehow I think they have this right. Is it better to not tell them?

 
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